title: What is family-centered care for nursing home residents with advanced dementia?
abstract: To understand family members' perspectives on person- and family-centered end-of-life care provided to nursing home (NH) residents with advanced dementia, we conducted a qualitative follow-up interview with 16 respondents who had participated in an earlier prospective study, Choices, Attitudes, and Strategies for Care of Advance Dementia at End of Life (CASCADE). Family members of NH residents (N = 16) with advanced dementia participated in semistructured qualitative interviews that inquired about overall NH experience, communication, surrogate decision making, emotional reaction, and recommendations for improvement. Analysis identified 5 areas considered important by family members: (1) providing basic care; (2) ensuring safety and security; (3) creating a sense of belonging and attachment; (4) fostering self-esteem and self-efficacy; and (5) coming to terms with the experience. These themes can provide a framework for creating and testing strategies to meet the goal of person- and family-centered care.
authors.affiliation: 1MGH Institute of Health Professions, School of Nursing, Boston, MA, USA.
authors.forename: Ruth Palan
authors.initials: RP
authors.lastname: Lopez
authors.forename: Kathleen M
authors.initials: KM
authors.lastname: Mazor
authors.forename: Susan L
authors.initials: SL
authors.lastname: Mitchell
authors.forename: Jane L
authors.initials: JL
authors.lastname: Givens
mesh_terms: D016241:Child of Impaired Parents / Q000523:psychology; D003704:Dementia / Q000451:nursing* / Q000628:therapy; D005190:Family / Q000523:psychology*; D022143:Family Nursing; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009735:Nursing Homes; D018802:Patient-Centered Care; D036301:Qualitative Research; D013727:Terminal Care
keywords: dementia; nursing homes; person-centered care; qualitative research; terminal care